Is this diet going to work?Long post

[Guest guest]

I don't know if I am doing this diet right for my 9 year old son?

He's been on it about 1 1/2 months. He is almost non verbal so he

doesn't communicate much. He listens and will start bopping his head

around if you sing to him. He doesn't have the " legal " autistic

label. He'll work an easy tray puzzle sometimes.

had his first grand mal at the age of 3, he never had any

vaccines. I believe the problems came about from living in a home

with mold. We dealth with many neuros at many hospitals. I told all

of them he was the last of my 7 children and that he was always

different since birth. They never listen. He was my only baby to have

colic even tho he was breastfed. When he was 5 years old they had him

on 3 different prescriptions, 17 pills a day and the eeg was showing

one seizure a minute, 17-25 grand mals a day. Every minute means

constantly. No medicine ever stopped the seizures. They tried 19

different ones.

We ditched the neuros and started with the natural drs. We've been to

many. The 3rd one we went to assumed we knew he had autism. I

researched it and agreed, although I did read that autism symptoms can

mimic allergy symptoms. Now I had something more to work with. He

was already eating limited foods since he was allergic to almost

everything, including environmental. He'd been off pop, candy,

Mcs, etc...since the age of 5. We ripped out our carpet, I make

all my cleaning supplies...

I might add here that had full speech and was potty trained. He

started regressing around the age of 3. He wears a pull up.

We have pretty much seen him go up and down thru the years. But one

day 2 years ago, he woke up singing a song from the radio, playing eye

spy constantly, he was counting to 15, he knew his colors, etc...This

was from a pretty much non verbal child. We thought we had a miracle,

altho I still like to think that God was showing me that he will be

well again. I just have to figure out how. We had him for 2 wonderful

weeks, then he got a bun ate it and disappeared. We haven't seen him

since.

At the time he was eating only 4 foods. 3 happened to be scd one was

illegal Taro root. At that time I had turned the taro root into poi

which is fermented. Did that do something good for him? Is that what

snapped it out of his shell? Should I try sauerkraut?

Should I get some tests done? I admit I don't really have much faith

in drs or tests. The tests work, they don't work.

s stools have gone from mushy/loose to firm. He's not regular

yet. There is still little speech. Once in awhile he plays a

computer game (if you could call it that), plays nintendo, does a

puzzle. Mostly he sits or walks walks walks. The seizures are much

much less. For that alone I would continue with the diet. He is

eating alot more than 4 foods now and that is great too.

How can I tell if the yogurt is not being tolerated? He is much more

quiet since being on the diet. I've read that some people can't

tolerate the yogurt. What about the honey? Today he had 2 grand

mals. Is it still from the banana peel he ate the other day? Oops.

It's happened a few times. It has got to be really hard to digest.

The beef? I don't think I know what I am doing. I truly believe in

my heart that the diet is the answer.

Should I get testing done? My dr said he will do whatever it takes.

How do I figure out if he is tolerating a food? Should I try

fermented food? Should I continue with the yogurt? Elaine said we

cannot do the diet without the yogurt. How long should I wait to see

some improvements? Should I start all over with the intro?

Right now he is eating 2 cups of the yogurt a day, beef, chicken,

honey, carrots, tomatao jc, grape jc, green beans, banana, 2 kinds of

squash and spinach.

Does any one have any ideas or opinions? I feel like I don't know

what I am doing. Maybe I am not doing something right. Maybe his

body is till getting used to the yogurt.

What about pancreatic deficiency or mitochondrial disease? A woman

from another list mentioned this to me.

Thank you to anyone who read this. Sorry for the length. I need to

help my son.

jo

[Guest guest]

jo,

I am still learning about good doctors since I and my

son have both suffered with terrible ones.

I am seeing a doctor who is familiar with functional

medicine. They treat you like a whole person and look

for imbalances through your whole body.

http://www.functionalmedicine.org/

There are not all that many doctors on their web site

and I could not find one on my insurance, but I lucked

out. I found a D.O. who was interested in inflammation

and when I went to see her, she knew all about

functional medicine. A D.O. (osteopath) is a medical

doctor who has been trained to look at the whole

person together. You might have better luck with those

kinds of doctors. If you mention mold I am sure they

would test your son for it. Mold infections can be

very very serious.

There is nothing that says you cannot try a doctor and

not go back. If a doctor recommends something you

don't agree with, it's all right to not do what they

say. It's hard to remember sometimes that you're the

one in charge. I have been fighting so hard to get a

great doctor, and I finally found one.

B.

ASD son, RA self, SCD Nov. 2007

****************

--- ilovekidsanddogs

wrote:

> I don't know if I am doing this diet right for my 9

> year old son?

> He's been on it about 1 1/2 months. He is almost non

> verbal so he

> doesn't communicate much. He listens and will start

> bopping his head

> around if you sing to him. He doesn't have the

> " legal " autistic

> label. He'll work an easy tray puzzle sometimes.

>

> had his first grand mal at the age of 3, he

> never had any

> vaccines. I believe the problems came about from

> living in a home

> with mold. We dealth with many neuros at many

> hospitals. I told all

> of them he was the last of my 7 children and that he

> was always

> different since birth. They never listen. He was my

> only baby to have

> colic even tho he was breastfed. When he was 5

> years old they had him

> on 3 different prescriptions, 17 pills a day and the

> eeg was showing

> one seizure a minute, 17-25 grand mals a day. Every

> minute means

> constantly. No medicine ever stopped the seizures.

> They tried 19

> different ones.

>

> We ditched the neuros and started with the natural

> drs. We've been to

> many. The 3rd one we went to assumed we knew he had

> autism. I

> researched it and agreed, although I did read that

> autism symptoms can

> mimic allergy symptoms. Now I had something more to

> work with. He

> was already eating limited foods since he was

> allergic to almost

> everything, including environmental. He'd been off

> pop, candy,

> Mcs, etc...since the age of 5. We ripped out

> our carpet, I make

> all my cleaning supplies...

>

> I might add here that had full speech and was

> potty trained. He

> started regressing around the age of 3. He wears a

> pull up.

>

> We have pretty much seen him go up and down thru the

> years. But one

> day 2 years ago, he woke up singing a song from the

> radio, playing eye

> spy constantly, he was counting to 15, he knew his

> colors, etc...This

> was from a pretty much non verbal child. We thought

> we had a miracle,

> altho I still like to think that God was showing me

> that he will be

> well again. I just have to figure out how. We had

> him for 2 wonderful

> weeks, then he got a bun ate it and disappeared. We

> haven't seen him

> since.

>

> At the time he was eating only 4 foods. 3 happened

> to be scd one was

> illegal Taro root. At that time I had turned the

> taro root into poi

> which is fermented. Did that do something good for

> him? Is that what

> snapped it out of his shell? Should I try

> sauerkraut?

>

> Should I get some tests done? I admit I don't

> really have much faith

> in drs or tests. The tests work, they don't work.

>

> s stools have gone from mushy/loose to firm.

> He's not regular

> yet. There is still little speech. Once in awhile

> he plays a

> computer game (if you could call it that), plays

> nintendo, does a

> puzzle. Mostly he sits or walks walks walks. The

> seizures are much

> much less. For that alone I would continue with the

> diet. He is

> eating alot more than 4 foods now and that is great

> too.

>

> How can I tell if the yogurt is not being tolerated?

> He is much more

> quiet since being on the diet. I've read that some

> people can't

> tolerate the yogurt. What about the honey? Today

> he had 2 grand

> mals. Is it still from the banana peel he ate the

> other day? Oops.

> It's happened a few times. It has got to be really

> hard to digest.

> The beef? I don't think I know what I am doing. I

> truly believe in

> my heart that the diet is the answer.

>

> Should I get testing done? My dr said he will do

> whatever it takes.

> How do I figure out if he is tolerating a food?

> Should I try

> fermented food? Should I continue with the yogurt?

> Elaine said we

> cannot do the diet without the yogurt. How long

> should I wait to see

> some improvements? Should I start all over with the

> intro?

>

> Right now he is eating 2 cups of the yogurt a day,

> beef, chicken,

> honey, carrots, tomatao jc, grape jc, green beans,

> banana, 2 kinds of

> squash and spinach.

>

> Does any one have any ideas or opinions? I feel

> like I don't know

> what I am doing. Maybe I am not doing something

> right. Maybe his

> body is till getting used to the yogurt.

>

> What about pancreatic deficiency or mitochondrial

> disease? A woman

> from another list mentioned this to me.

>

> Thank you to anyone who read this. Sorry for the

> length. I need to

> help my son.

>

> jo

>

>

________________________________________________________________________________\

____

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[Guest guest]

You're still in the very beginning stages at only six weeks on SCD. Many

changes can happen in that time.

Are you using goat milk yogurt? Or cow? You started the yogurt from the very

beginning?

It seems like you've started yogurt a lot sooner than we usually suggest. We

also recommend starting with just a very small amount (like 1/4 tsp) and working

up very slowly. If you're not seeing any negatives since starting yogurt, then

I'm inclined to think it's not a matter of him not tolerating it. But... I'm

still curious as to whether you're using goat or cow yogurt. And what starter?

Is he taking supplemental acidophilus, too? Is he taking a lot of other

supplements? If so, are you absolutely sure they are all legal?

Fermented foods (SCD legal) are generally considered a little more advanced....

foods such as sauerkraut. You *could* make sauerkraut, according to SCD

instructions (let me know... I can forward them)... and then just have him

drink some of the juice drained from it, to get the probiotics.

PLEASE don't give him any poi... stick with legal foods! Although he may have

benefitted from whatever probiotics may have been in it, we just can't recommend

it since taro is illegal.

I'm not sure to what extent eating a banana peel would mess things up... but you

could always do a day of Intro to help get him back on track.

Keep it simple... don't be tempted to move on to more complicated, advanced

foods. You need to give it time. It sounds like his gut has been a mess for a

long time... and it will take some time to turn it around. I would try to

commit to six months, at least.

I'm glad to hear his seizures have improved. My daughter is a seizure kid,

too... and just like your son, no medication has ever worked to completely stop

them. Some have made her have many MORE seizures... and she's had serious and

scary reactions to several meds. I hate seizure meds!

Hang in there...

Patti, mom to Katera, age 11, SCD this time since May 2006 (first time,

2003-2004)

Is this diet going to work?Long post

<<I don't know if I am doing this diet right for my 9 year old son?

He's been on it about 1 1/2 months. >>

<<We have pretty much seen him go up and down thru the years. But one

day 2 years ago, he woke up singing a song from the radio, playing eye

spy constantly, he was counting to 15, he knew his colors, etc...This

was from a pretty much non verbal child. We thought we had a miracle,

altho I still like to think that God was showing me that he will be

well again. I just have to figure out how. We had him for 2 wonderful

weeks, then he got a bun ate it and disappeared. We haven't seen him

since.>>

<<s stools have gone from mushy/loose to firm. He's not regular

yet. >><<The seizures are much

much less. For that alone I would continue with the diet. He is

eating alot more than 4 foods now and that is great too.

How can I tell if the yogurt is not being tolerated?>>

<<Today he had 2 grand

mals. Is it still from the banana peel he ate the other day? >><<Should I

start all over with the intro?>>

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>I use GI Health Progurt starter and goat milk, fresh from our

backyard. Kirkmans legal lactobacillus acidophilus, Enzymedica Digest

Gold, Kirkmans Super Nu-thera, and methyl b12 nasal spray. Legal DMG.

I would like to add GABA back to his diet and the B complex.

I wasn't planning on doing the Poi again, just something legal to

ferment. Are probiotics what they get from fermenting? Why isn't

the yogurt enough since it is so strong?

Should I just stick with the 2 cups a day of yogurt since he's up

there and has been for a good week?Patti, I hope Katera is doing

better since being scd.

Thank you all

jo

> You're still in the very beginning stages at only six weeks on SCD.

Many changes can happen in that time.

>

> Are you using goat milk yogurt? Or cow? You started the yogurt

from the very beginning?

>

> It seems like you've started yogurt a lot sooner than we usually

suggest. We also recommend starting with just a very small amount

(like 1/4 tsp) and working up very slowly. If you're not seeing any

negatives since starting yogurt, then I'm inclined to think it's not a

matter of him not tolerating it. But... I'm still curious as to

whether you're using goat or cow yogurt. And what starter?

>

> Is he taking supplemental acidophilus, too? Is he taking a lot of

other supplements? If so, are you absolutely sure they are all legal?

>

> Fermented foods (SCD legal) are generally considered a little more

advanced.... foods such as sauerkraut. You *could* make sauerkraut,

according to SCD instructions (let me know... I can forward them)...

and then just have him drink some of the juice drained from it, to

get the probiotics.

>

> PLEASE don't give him any poi... stick with legal foods! Although

he may have benefitted from whatever probiotics may have been in it,

we just can't recommend it since taro is illegal.

>

> I'm not sure to what extent eating a banana peel would mess things

up... but you could always do a day of Intro to help get him back on

track.

>

> Keep it simple... don't be tempted to move on to more complicated,

advanced foods. You need to give it time. It sounds like his gut has

been a mess for a long time... and it will take some time to turn it

around. I would try to commit to six months, at least.

>

> I'm glad to hear his seizures have improved. My daughter is a

seizure kid, too... and just like your son, no medication has ever

worked to completely stop them. Some have made her have many MORE

seizures... and she's had serious and scary reactions to several meds.

I hate seizure meds!

>

> Hang in there...

>

> Patti, mom to Katera, age 11, SCD this time since May 2006 (first

time, 2003-2004)

>

>

> Is this diet going to work?Long post

>

>

> <<I don't know if I am doing this diet right for my 9 year old son?

> He's been on it about 1 1/2 months. >>

>

> <<We have pretty much seen him go up and down thru the years. But one

> day 2 years ago, he woke up singing a song from the radio, playing eye

> spy constantly, he was counting to 15, he knew his colors, etc...This

> was from a pretty much non verbal child. We thought we had a miracle,

> altho I still like to think that God was showing me that he will be

> well again. I just have to figure out how. We had him for 2 wonderful

> weeks, then he got a bun ate it and disappeared. We haven't seen him

> since.>>

>

> <<s stools have gone from mushy/loose to firm. He's not regular

> yet. >><<The seizures are much

> much less. For that alone I would continue with the diet. He is

> eating alot more than 4 foods now and that is great too.

>

> How can I tell if the yogurt is not being tolerated?>>

>

> <<Today he had 2 grand

> mals. Is it still from the banana peel he ate the other day?

>><<Should I start all over with the intro?>>

>

>

> Recent Activity

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> to share their ideas.

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>

> easier than ever.

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[Guest guest]

Jo.... Glad to hear you are lucky enough to have your own fresh goat milk,

and that he's getting good SCD goat yogurt. Yes, I guess if you're already up

to this much, I would stay there.... unless you feel something negative has

changed since you started it? It's hard to know.... since you really got into

yogurt much earlier and at a larger quantity than we usually suggest.

Is your Super NuThera the hypoallergenic one?

Yes, fermented foods are given for the probiotics. It's really pretty early for

that, unless you just had him drink the juice.

Yes, Katera does better seizure-wise on SCD.... especially since we added the

Vitamin K protocol a year ago. Still not entirely seizure free but they are

MUCH more manageable... shorter and less frequent.

Patti

Re: Is this diet going to work?Long post

>I use GI Health Progurt starter and goat milk, fresh from our

backyard. Kirkmans legal lactobacillus acidophilus, Enzymedica Digest

Gold, Kirkmans Super Nu-thera, and methyl b12 nasal spray. Legal DMG.

I would like to add GABA back to his diet and the B complex.

I wasn't planning on doing the Poi again, just something legal to

ferment. Are probiotics what they get from fermenting? Why isn't

the yogurt enough since it is so strong?

Should I just stick with the 2 cups a day of yogurt since he's up

there and has been for a good week?Patti, I hope Katera is doing

better since being scd.

Thank you all

jo

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[Guest guest]

> >I use GI Health Progurt starter and goat milk, fresh from our

> backyard. Kirkmans legal lactobacillus acidophilus, Enzymedica Digest

> Gold, Kirkmans Super Nu-thera, and methyl b12 nasal spray. Legal DMG.

> I would like to add GABA back to his diet and the B complex.

>

> I wasn't planning on doing the Poi again, just something legal to

> ferment. Are probiotics what they get from fermenting? Why isn't

> the yogurt enough since it is so strong?

>

> Should I just stick with the 2 cups a day of yogurt since he's up

> there and has been for a good week?Patti, I hope Katera is doing

> better since being scd.

> Thank you all

>

> jo

>

> Recent Activity

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> on healthy eating.

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[Guest guest]

You can remove high salicylate foods if you think they are a problem for her.

The whole issue of salicylates, phenols, amines, etc. is beyond SCD.... it's

not a requirement to remove any of them to follow SCD correctly. That is a very

individualized thing, and totally up to you.

Patti

----- Original Message -----

The Super Nu-thera is the hypoallergenic one. What about the foods

that have sclicylates in them? If I took them out right now that

would be a good part of his diet.

Any thoughts?

jo

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[Guest guest]

Hi Jo,

>

> I don't know if I am doing this diet right for my 9 year old son?

> He's been on it about 1 1/2 months. He is almost non verbal so he

> doesn't communicate much. He listens and will start bopping his

head

> around if you sing to him. He doesn't have the " legal " autistic

> label. He'll work an easy tray puzzle sometimes.

>

> had his first grand mal at the age of 3, he never had any

> vaccines. I believe the problems came about from living in a home

> with mold. We dealth with many neuros at many hospitals. I told

all

> of them he was the last of my 7 children and that he was always

> different since birth. They never listen. He was my only baby to

have

> colic even tho he was breastfed. When he was 5 years old they had

him

> on 3 different prescriptions, 17 pills a day and the eeg was showing

> one seizure a minute, 17-25 grand mals a day. Every minute means

> constantly. No medicine ever stopped the seizures. They tried 19

> different ones.

>

> We ditched the neuros and started with the natural drs. We've been

to

> many. The 3rd one we went to assumed we knew he had autism. I

> researched it and agreed, although I did read that autism symptoms

can

> mimic allergy symptoms. Now I had something more to work with. He

> was already eating limited foods since he was allergic to almost

> everything, including environmental. He'd been off pop, candy,

> Mcs, etc...since the age of 5. We ripped out our carpet, I

make

> all my cleaning supplies...

>

> I might add here that had full speech and was potty trained.

He

> started regressing around the age of 3. He wears a pull up.

>

> We have pretty much seen him go up and down thru the years. But one

> day 2 years ago, he woke up singing a song from the radio, playing

eye

> spy constantly, he was counting to 15, he knew his colors,

etc...This

> was from a pretty much non verbal child. We thought we had a

miracle,

> altho I still like to think that God was showing me that he will be

> well again. I just have to figure out how. We had him for 2

wonderful

> weeks, then he got a bun ate it and disappeared. We haven't seen

him> since.

>

> At the time he was eating only 4 foods. 3 happened to be scd one

was> illegal Taro root. At that time I had turned the taro root into

poi> which is fermented. Did that do something good for him? Is

that what> snapped it out of his shell? Should I try sauerkraut?>>>>

It may have been a combination of the fermented veggie and the lack

of starches.

Fermented foods along with SCD may help. Yogurt, fermented veggies,

sauerkraut may help.

<<<<Should I get some tests done? I admit I don't really have much

faith> in drs or tests. The tests work, they don't work.

>

> s stools have gone from mushy/loose to firm. He's not regular

> yet. There is still little speech. Once in awhile he plays a

> computer game (if you could call it that), plays nintendo, does a

> puzzle. Mostly he sits or walks walks walks. The seizures are much

> much less. For that alone I would continue with the diet. He is

> eating alot more than 4 foods now and that is great too.>>>

The firm stools are a good indicator that things are improving.

And being able to tolerate more foods is good also.

<<<<<How can I tell if the yogurt is not being tolerated? He is much

more> quiet since being on the diet. I've read that some people can't

> tolerate the yogurt.>>>>>

Since he had mushy/loose stools preSCD you can use that as an

indicator to test if he tolerates the yogurt or not (or any other

food).

Are you using cow or goat yogurt?

Dripping the yogurt helps some people tolerate it better.

<<<<<What about the honey?>>>>>

The honey should be (1.) clear (ie. filtered to remove pollenetc..)

and (2.) be pure 100% honey. It can be raw or pasteurized as long as

it fits the other 2 criteria also.

<<<<Today he had 2 grand

> mals. Is it still from the banana peel he ate the other day?

Oops.

> It's happened a few times. It has got to be really hard to

digest.>>>>

Banana peels are too hard to digest and regular ones are also

sprayed - pesticides, herbicides etc...

<<<< The beef? I don't think I know what I am doing.>>>

Does he have a problem with beef?

<<<<I truly believe in> my heart that the diet is the answer. Should

I get testing done? My dr said he will do whatever it takes.

> How do I figure out if he is tolerating a food?>>>>>

Since his stools has improved greatly you can use that, a food

journal and return to the intro diet to test tolerating foods. Redo

the intro for 1-2 days and start adding foods again. Record the

foods, bm's and symptoms (rate symptoms on a scale of 1-10) for each

day - you should see patterns emerge.

<<<<<Should I try

> fermented food? Should I continue with the yogurt? Elaine said we

> cannot do the diet without the yogurt.>>>>

I don't think Elaine said you can't do the diet without yogurt.

Some people have a true dairy allergy and heal without it. They are

able to use fermented veggies instead to get good bacteria. She did

express concern that vegans would not have enough protein, but that

the diet could work for vegetarians if they used legal protein

sources like the yogurt and eggs etc..

<<<<How long should I wait to see

> some improvements? Should I start all over with the intro?>>>>

I think restarting would help pinpoint any food intolerances. He may

not be having any though. It is natural to swing back and forth with

good bowels a bit in the beginning of the diet. As long as there is

steady improvement you are doing good : )

<<<<<Right now he is eating 2 cups of the yogurt a day, beef, chicken,

> honey, carrots, tomatao jc, grape jc, green beans, banana, 2 kinds

of> squash and spinach.>>>

If you redo the intro, when you are finished and going to readd foods

do so in this order:

Intro foods (reminder:carrots cooked thoroughly and pureed)

-squash

-banana

-yogurt dripped (start with smaller amount and slowly increase)

-spinach (are you getting vitamin C in your grape juice? Depends on

the type/brand you use)

-tomato juice (is this fresh or canned?)

green beans; well cooked

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and

[Guest guest]

Hi jo,

> >The Super Nu-thera is the hypoallergenic one. What about the foods

> that have sclicylates in them? If I took them out right now that

> would be a good part of his diet.

>

> Any thoughts?>>>

If you restart with the intro diet you will get a better idea of

which if any of the foods (and not bananana peels are a problem.

Once you get a list you can see if they are high in salicylates or

look at ways to cope (double peeling, enzymes ..)

Sheila, SCD Feb. 2001, UC 23yrs, PCOD 22yrs

mom of and

[Guest guest]

My son has mitochondrial disorder. Regression is a big sign that

something metabolic might be behind what is happening. Seizures would

be another. Whether mito or something else I don't know.

If you want more information please feel free to email me. I don't

visit here much anymore (metabolically my son can't handle this diet)

but I do have an understanding of both SCD and metabolic stuff.

le